Fatigue has been called the most under-managed problem for people with inflammatory bowel disease (IBD).1 Fatigue is the second most common symptom of Crohn’s disease, and fatigue is reported by approximately a third of people with ulcerative colitis.2 It affects most people with active IBD, as well as many people in remission.
Fatigue is an ongoing and overwhelming sense of tiredness, weakness, or exhaustion. It interferes with your ability to do physical or mental work. Getting enough sleep or rest does not cure fatigue.3
Some studies show that fatigue is more bothersome than bowel symptoms.3 Fatigue can decrease your quality of life and increase disability.3,4 It can affect your job, family life, social activities, and emotions.
What causes fatigue in people with Crohn's or UC?
Several factors contribute to fatigue in inflammatory bowel disease:
Difficulty sleeping
People with inactive IBD report having a harder time falling asleep and staying asleep than healthy controls.5 In one survey, 71% of respondents reported waking up during the night, usually due to diarrhea or abdominal pain.5 As a result, they had less daytime energy and increased tiredness. They were more likely to use sleeping pills. About 24% of people with Crohn’s disease and 15% of people with ulcerative colitis have night sweats or fever that can disrupt sleep.2
Anemia
About 60% to 80% of people with inflammatory bowel disease are iron deficient. One-third are anemic.6Anemia is a condition in which your blood does not carry enough oxygen throughout your body. You may feel low on energy. This limits your ability to participate in normal activities. Another symptom of iron-deficiency anemia is restless legs syndrome, which can disrupt sleep.6
Medication side effects
Fatigue is a side effect of methotrexate and azathioprine.3
Depression
Difficulty sleeping and fatigue are overlapping symptoms of IBD and depression.3 About a quarter of people with Crohn’s disease are depressed.7 Depression also is seen more often in people with ulcerative colitis compared to people without IBD.8 The overlap between depression and IBD may play a role in feelings of fatigue even during periods of remission.
Inflammation
Fatigue is a common symptom of many chronic inflammatory diseases. For example, it is well known in rheumatoid arthritis, lupus, and ankylosing spondylitis (a spinal disorder). Researchers have studied animals injected with inflammatory signaling chemicals. The animals become tired and less functional.3
How common is fatigue in inflammatory bowel disease?
Fatigue affects many people with IBD, and it occurs more frequently among people with Crohn's disease. Approximately 54% of people with Crohn’s disease and 33% of those with ulcerative colitis report experiencing fatigue.2 Fatigue also seems to worsen with more aggressive disease, with the people with the most aggressive Crohn’s disease most likely to report fatigue.9 Up to 86% report feeling fatigue during moderate-to-severely active Crohn’s disease.3 Even during remission, about 40% to 50% of patients with IBD disease report fatigue.3,9
How is fatigue evaluated?
Many different scales and questionnaires are used to measure fatigue. No single standard exists.3 One questionnaire about fatigue with inflammatory bowel disease was developed and scientifically validated in the United Kingdom and is available online. You or your provider may be interested in using this questionnaire to track changes over time.1
Your health care provider may do laboratory tests. It is common to check for anemia, active inflammation, thyroid function, or pregnancy.10 Your provider may ask questions about sleep hygiene, medications, and exercise.
How is fatigue treated?
Some people feel less fatigue once they start treatment for Crohn’s disease.3 In other inflammatory conditions, biologic medications reduce fatigue.3 One theory is that the intestinal lining needs to heal for the fatigue to improve. People in remission from symptoms often still have inflammation in the digestive tract.
If you have iron-deficiency anemia, your health care provider probably will recommend an iron supplement. Iron supplements can be taken by mouth or intravenously. Iron supplements may not be enough for severe anemia. Your provider may prescribe an erythropoiesis-stimulating agent.6 These medications cause your bone marrow to make more red blood cells.
If you are taking medications that cause fatigue, it may be possible to switch.11
You may find some general recommendations for fatigue helpful.10 Perhaps surprisingly, moderate exercise can be better than rest. An example of moderate exercise is 30 minutes of walking. Doing your best to maintain your relationships with friends and family may help with fatigue. You may find that returning to work—particularly if you can have flexible hours—can be energizing. Of course, if your IBD is very severe, these activities may be difficult or impossible, which can be very frustrating.
Extra hours of sleep may not make you feel more rested. However, improving the quality of sleep you get might. Tips for improving sleep quality include:10,12
- Avoid caffeine, nicotine, chocolate, and alcohol before bed.
- Increase your exposure to natural, bright light during the day.
- Exercise early in the day.
- Limit naps to less than 1 hour in the early afternoon.
- Eat your last meal several hours before bed.
- Make sure that your sleep environment and bedtime routine are pleasant and relaxing.
- Limit noise, television, and other screens before bed.
- Keep extra pajamas and a fresh pillowcase nearby and sleep on a towel, if night sweats are a problem.